Many women with spina bifida will have a safe and successful pregnancy, but you will probably need to plan more carefully than other women. We hope this information will give you an idea of how to get ready, and what to expect, if you decide to try for a baby.
As a general rule, if you or your partner has spina bifida or you have already had a child with spina bifida, you have a 1 in 25 chance of having another baby with the condition. You may wish to see a genetic counsellor to discuss the chances of a pregnancy being affected by spina bifida or another neural tube defect. Your GP can refer you to a genetic counsellor.
Before you start your other preparation, let the doctors involved in your care know about your plans, as your care may need to change before and throughout your pregnancy.
If you choose to try to lower the chance of your baby having spina bifida or anencephaly (a fatal condition where the baby’s brain doesn’t develop), you are advised to take 5mg of folic acid (available on prescription) for around 8 weeks before you start trying to conceive. Shine also suggests you take vitamin B12, 2.5mcg for around 3 months before conceiving. This will be included in pre-pregnancy multivitamins, and will be especially important if you’re vegetarian or vegan.
Epilepsy
If you take epilepsy medication, let your neurologist know. Some epilepsy medication, such as sodium valproate are associated with several health problems in babies, and you may be advised to change medication. This would need to be done gradually, under close supervision to make sure your epilepsy is well controlled, and this can take many months to do safely. Your medication dose may need to be changed during pregnancy,as your blood volume increases.
Weight
You are advised to be at a healthy weight before you start trying for a baby.
A BMI between 18.5 and 24.9 is considered healthy, which is around 9 stones for a woman of 5 feet 5 inches. Being under- or overweight can result in health problems for you and your baby, and it could take you much longer to fall pregnant.
Kidneys
If you have any renal problems, you would need to take advice from your Urologist or Nephrologist to see whether pregnancy would be safe for you. As pregnancy goes along, your blood volume will increase about 30%, and all this extra blood needs ‘cleaning’ by the kidneys. If you’ve never had kidney problems, ask your GP for a blood test just to check everything is still OK.
Bladder
If you have a urine infection (UTI) once you start trying, stop trying that month and use a condom until your next period, especially if you need to take trimethoprim. If you take prophylactic antibiotics to prevent UTIs, talk to your Urologist about whether it will be safe or advisable to stop. Trimethoprim is associated with birth conditions, including spina bifida. If you take medication for an overactive bladder, talk to your Urologist. Just before and during the first few months of pregnancy, you’ll usually be advised to stop your medicines. If you
have an overactive bladder, you will probably find increased leakage, frequency and urgency of passing urine, especially as your pregnancy progresses. You may need to wear continence pads if you are leaking large amounts. For some of you, it could lead to reflux back to the kidneys, so you might need more regular scans to check. Some women find it gets much harder to catheterise in the last few months of pregnancy.
Ultrasound scans
Most scans give the best view of the baby when your bladder is full, as the full bladder ‘lifts’ the uterus above the pelvic bones. If you choose to have the ultrasound scans you’re offered, explain if you can’t fill your bladder very much. There’s no point drinking more water if it won’t improve the scan.
Bowels
Most women, with or without spina bifida, find they get more constipated during pregnancy. Increasing water intake, eating plenty of fruits, vegetables, and pulses (lentils, peas and beans) can help but you may need to take a laxative, even if you don’t usually need to, so check with your GP what would be best. Keep as active as you can to help things moving along.
Shunt
Many women with shunts have completely routine pregnancies, with no shunt complications at all. If you need a Caesarean delivery, make sure your Obstetric team know about your shunt. They might want to talk with a Neurosurgeon before your delivery
Back
If you have curvature of your lower spine, it can mean less space for your baby to grow, and you might need extra monitoring in the later months of your pregnancy. If you have a curvature of the top part of your back, it can make it harder for you to breathe, especially as the baby grows up under your ribs. Some women need to rest, and this may even include bed rest, in the last few months. Occasionally, it will be best to deliver your baby a little early.
Pelvis
Some women with spina bifida have changes to the shape of their pelvis which can mean a Caesarean would be safer than delivering vaginally. Your midwife should be able to advise you on this. You might want a scan at around 36 weeks, to check how big your baby is, and whether this affects your delivery plans. Very small as well as very large babies can be harder to deliver vaginally
Balance
As your pregnancy progresses, you gain weight and your shape changes, balance may be a problem especially if you normally use calipars and or crutches. You may have to use a wheelchair for a period of time.
Pain
If you usually take pain medication, you will usually be advised to stop before and during the first few months of pregnancy at the least. This might be very difficult, and some medicines should be reduced slowly over several weeks to prevent withdrawal symptoms. Some women find warm baths and yoga techniques/mindfulness helpful, but often it’s a case of ‘getting through it’. You might have more pain, or new pain such as symphysis pubis dysfunction.
Click here for more information about pelvic pain in pregnancy
You might experience more back pain, as your posture changes and you’re carrying more weight, and for some of you, this will not go completely once you’ve had your baby
Before Admission
You may wish to visit the maternity unit to have a look around where you will be giving birth. This will give you an opportunity to familiarise yourself with the facilities, discuss access issues and meet some of the members of staff. During this visit, make the staff aware of any additional equipment you may require such as a pressure relieving mattress, cushion, hoist or other transfer equipment.
Planning for delivery
If your pelvis is narrow, or your abdomen muscles are not strong enough to push, a Caesarean might be a safer option than vaginal delivery. A Caesarean might also save damage to your pelvic floor, which might prevent bladder and bowel leakage later on. However, if possible, a vaginal delivery is the best start for your baby, and you will be able to return to your usual activities sooner than after a Caesarean. If it is decided that a vaginal delivery is best, you may need closer monitoring than other women. It can sometimes be hard to predict how the labour will go and how your spina bifida will affect it, and it’s important that assumptions aren’t made.
Occasionally, it may be possible for women with spina bifida to have spinal analgesia (injections into the back to block pain) but it varies from person to person, as the spina bifida lesion and shape of the bones often stop the analgesic from working. It’s a good idea to ask to talk with an anesthetist at your antenatal appointments well ahead of your delivery, to explore your options for pain relief. Professionals shouldn’t assume that because you have no skin sensation in certain areas, you won’t feel the pain of childbirth!
It’s a good idea to get as much in place before you go home, especially if you have a Caesarean, as this will mean driving and lifting would not be advised for several weeks. Cribs that attach to your bed can make it easier to tend to your baby without getting out of bed. Sometimes it is easier to leave your car seat in the car and lift your baby into a carry cot than trying to carry the car seat too.
If you use a wheelchair, you can purchase a lightweight pram that is easy to push, fold and attaches to your wheelchair. An occupational therapist will be able to advise you on suitable equipment to make it easier to care for your baby.
If anyone offers help, accept it in the spirit it’s meant, and give them something to do, especially the mundane chores like laundry. It will help you conserve your energy for your baby. It’s normal to feel exhausted in the early weeks, and it takes time for the hormones to settle. You might feel tearful or sensitive and feel offers of support imply you can’t cope. Mostly people just want to help. If the low mood or tearfulness last longer than a couple of weeks, let your Health Visitor or GP know.